Meet Bunky

“Yes, meat, no wheat!”

This was my 3-year old daughter’s mantra shortly after being diagnosed with celiac in May 2011.

We call her Bunky. You can too.

Although it had only been a month since her celiac diagnosis (via blood test since we opted out of the “gold standard” endoscopy – more on that later) Bunky already knew that wheat (along with barley, rye and oats) is what made her sick for several months leading up to her third birthday. At her party she barely ate, refusing even the sugar cookie with pink icing that she helped make. Looking back at pictures of that day, her face looked pale and her body emaciated.

Fast forward to a month of eating gluten free, and she not only gained five pounds, but regained her vibrancy, energy, and happiness. Her face of early spring, gaunt and angular, eyes sunken and circled, disappeared. The softness and color returned to her cheeks, and her impish blue eyes sparkle.

At the time of her diagnosis, she couldn’t button up her sweater, showed about zero interest in using the potty (“maybe tomorrow, mommy”) and was afraid of toy robots, yet she completely understood that she couldn’t eat anything with gluten. Accepted it at face value and even made up her own mantra.Β Strangely, or perhaps not so strangely, she ate more daringly and fearlessly once her body healed. Black bean soup, zucchini and eggs, bowls of brown rice, pickled shrimp, mangos. Things she wouldn’t look at before, she gobbled up and then with her mouth still full exclaimed, “this is good!”

[Sadly this all reverted back to picky kid times a thousand by age 4, but hey, maybe it will happen again someday. A mom can dream, can’t she?]

Now eating and living gluten free is practically second nature to our family, but that doesn’t mean things are easy. We face challenges every day, some minor, some not so minor. But my goal as Bunky’s mom is to help her navigate every challenge and triumph of our gluten free life.

IMG_1940

March 2013, my pre-K kid

My beautiful girl. Feb 201

My beautiful girl. Almost 6. February 2014

My girl, kindergardener. March 2014.

My kindergardener. March 2014.

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25 thoughts on “Meet Bunky

  1. She is very gorgeous!! My daughter didn’t have the typical sympoms, she is overweight and didn’t have the constant bathroom issues, but almost her first words when she learned to talk was “mommy my stomach hurt” “mommy I don’t feel good” “my whole body hurt”. By the time she was diagnosed she was hyperthyroid, diabetic and so very sick. Now she runs around like a normal pre-teen….mouthy and all. LOL I opted out of of the biopsy also because her blood results were very high and there was no question. I figured she had been through enough!!! I had had enough witht he medical field!!! We went gf and within a month she was so much better. A year later and my heart sings……thank you lord we found out what was wrong. Not a simple feat by any means but so worth having a happy healthy child! πŸ™‚

    • Aw, thanks Stephanie. You know, we felt fortunate that our daughter did present with such classic symptoms – certainly made it easier to diagnose her. Your poor girl, how tough it must have been for your family all these years not knowing what was wrong. My heart breaks that her first words were about her discomfort and pain 😦

      But SO glad to hear she is acting like a normal teen, with ‘tude and all!

      You are one of the FIRST people I’ve come across who has also opted out of the biopsy! Did your doctor give you a hard time? Ours did, then we changed doctors, and the newest one was of course recommending the biopsy, but didn’t push it. I totally agree with your reasoning, about your girl having been through enough. That was ours as well.

      • I’m sorry, but I am going to totally bud in on this conversation!! My son (2 years old) was recently diagnosed with celiac disease as well after his 2 year check up. The pediatrician said ALL of his antibodies were extremely elevated on the blood work, “off the charts” is actually what she said. we started the GF diet immediately. The pediatric GI MD couldn’t see us for 4 months! it was at this appointment he pushed the scope. when he found out we had already started the diet he wanted for us to have him eat gluten for 2 months so they could do the scope. we did not agree to this. He had gained 1 pound all year (from age 1 to 2) despite eating alot of good healthy foods. within a month of being GF he gained 2 pounds and continued to gain a pound each month after. we noticed big differences in his energy levels and language. The reason I wanted to join the conversation is to ask how you proceded from opting out of the biopsy. Do you follow a pediatric GI MD or just the pediatrician? did they run repeat lab work? are there any other alternative things to do to “manage” this disease besides the scope and repeat scopes? I worry sometimes he is exposed to it and i may not know. I feel like i made the right decision but sometimes the doubts and the influences from medical professionals makes me nervous. I just want to do the right thing! I’d appreciate any advice or insight you may have!

      • Hi Jocelyn, please butt in all you want! I have actually been meaning to write a post about our choice to opt OUT of the endoscopy for our daughter because like you said, it was quite controversial and very difficult. I also second guessed it afterwards, though now, looking back, I feel very confident that we made the right decision for our family.

        First of all, I’m sorry to hear your 2 year old son has celiac. For us, along with the relief at a diagnosis was also a deep sadness. However, like you saw with your son, our daughter immediately showed signs of improvement once she went gluten free, which was wonderful to see. Also like your son, my daughter’s blood results were “off the charts” high according to her first GI doctor. Upon hearing the news, we basically went shopping immediately and tossed our pantry. When our GI got wind of this, she wanted us to come in right away for an endoscopy and also put our girl back on gluten to make sure the results would be accurate. We were like, SAY WHAT?!?! For us, the 99% blood draw diagnosis (quote from that same doctor) and the fact that she immediately improved on the GF diet were enough for us to say NO to any invasive testing.

        This was a VERY personal and difficult decision. But in the end it was the only one that felt right for us and our girl. Many people have conflicting ideas about the “need” for an endoscopy, for what the docs like to call, “the gold standard” of diagnosis. In other countries a blood test can be enough for a diagnosis (along with symptoms and improvement on a GF diet) so I think parents have the right to refuse – and not to be made to feel shameful about that decision.

        We changed GI’s shortly after this and our current one is very respectful about our decision, BUT, they definitely would have pushed for us to have the endoscopy if we seemed into it. That said, we had another blood draw at 6 months post diagnosis, and then at one year, and we will be going for our daughter’s 2nd year blood draw in a few weeks. These blood draws have been able to provide info to us and our doctor about our daughter’s health, and so far an endoscopy has proved unnecessary. However, at 6 months when her results were still a bit higher than they would have liked, the doctor did say if at one year they weren’t significantly lower we might want to consider it. Luckily, her results were an improvement.

        If you want to ask me any more questions, I’m happy to offer my (un-expert!) opinion. Feel free to email me at danaheatherschwartz@yahoo.com. I know that it helped me to ask a few other parents about their decision soon after we made ours.

        Good luck and trust your instincts about your son’s health! If he’s gaining weight and feeling good, perhaps having his blood levels checked regularly is enough. Find a doctor who will respect, if not agree, with your decision and support you and your family.
        -Dana

  2. Actually our dr at the time had been treating me like a paranoid crazy mother. I would research stuff out then take it in to him and ask “could this be whats wrong”? I was getting really frightened that there was something life threating going on and NO ONE WOULD LISTEN TO ME! :0 When the blood tests came back, he was the one that said, he had never seen #’s that high when testing for celiac and he would refer me for a biopsy if I wanted, but really there was no question.

    I was so angry Dana!! I thought, you mean to tell me all these years she has been so sick and all I had to do was change her diet. At one point he even told me her stomach hurt all the time because she was constipated. He put her on this fiber powder (that of course contained wheat) and the poor child couldn’t move off the couch for weeks.

    There was actually a lady that came into my offce that had almost died from celiac (malnutrition). She is the one that told me to have her tested. I had never heard of it. I thank God for her everyday!!

    • Oh my gosh, I would have been beyond furious too… I’m so tired of the “crazy mother” thing that some doctors do, because every time I’ve heard a mom pull that card it turned out to be true! We should know when something is truly wrong, right? I mean, everyone makes mistakes, but it’s a mom’s job to be on the safe side for her kid, always.

      The gluten fiber powder kills me 😦

      Thank goodness for that woman who told you about celiac. It’s crazy that a stranger can lead the way a doctor sometimes can’t. Sheesh.

  3. Bunky is my hero! What 3 year old refuses cookies?? I’m adopting her mantra πŸ™‚ You’re doing a great job momma…she will be a pro at this by my age lol

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  5. O.K. so now I’m butting in πŸ™‚ sorry! But as Dana said please trust your instincts and find a dr who respects your decisions. My daughter suffered for years because I didn’t trust my instincts. I knew something was terriblly wrong and I kept listening to our (then) dr. Thanks to his wonderful advise she is now hypothroid and pre diabetic with several other health issues. I keep thinking why, why. why didn’t I find another dr!!! Her blood results were also off the charts, according to the dr the highest he’s ever seen. We also opted out of the biopsy. My feeling was she had suffered enough no way was I putting her through that, especially with the blood work being so high….and put her back on gluten …UUmmm I don’t flippin think so!! But it’s your child and your decision don’t let the medical field bully you. I researched like crazy for the first year, to the point I was educationg them on what was going on. It gets easier I promise! My daughter is now, soon to be a fourteen year old sassy healthy teenager, running around with her friends. She has to take meds for the rest of her life though that I truely think could have been prevented had I followed my heart. Good luck to you! πŸ™‚

  6. We were diagnosed a month apart in the same year. That must make us diagnosis buddies πŸ™‚ (I say we as we consider ourselves a celiac family, but its our daughter in our family too). xx

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  8. Dana you are an inspiration to many, I cannot imagine what people did twenty years ago, we live in an age where there are many people with this condition so the awareness is much better. The other day I asked a cafe owner how many gluten free meals would he prepare in a day and he said it use to be one a week and now its at least five a day.

  9. Thank you! Thak you! Thank you!

    Your Bunky sounds exactly like our little person who has just changed so much over the past month and a half since being gluten-free. He is a completely different litle 4yo boy.

    My paed would not consider doing a biopsy – he said it was completely unecessary for him to go through it considering his bloodwork results which he referred as being “off the charts”.

    I contacted the coeliac society (here in Australia) to become a member. They were aghast that I hadn’t followed through with the “full diagnosis”. After speaking with them I was paranoid that i had done something wrong. I contacted a respected gastroentoroligist and was told that they do not do biopsy’s on patients under 15. I was relieved and left it at that.

    To join the society I have to have “proof” that we have had all the tests done. So, we are going ahead without their support. We will continue to work with our paed and will consult with a dietican. The proof of the changes in our son is all that we need.

    • Cassandra – I’m so sorry for my very belated response!! I moved this summer and it was so crazy and I didn’t have much of an internet connection. I remember reading your heartfelt comment and wanting to respond, and then somehow it got lost in the chaos.

      But thank YOU for reaching out, and for telling me a bit about your son’s story. I love that your pediatrician would not consider doing a biopsy, good for him. “Off the charts” is exactly what they said to us, yet still wanting to do one. I get that some people want to know for absolute certain, and that there is concern about other kinds of damage or disease, but my gut (ha, pun intended) told me that it wasn’t necessary and I don’t regret our decision not to do one.

      I’m sorry the celiac society in Australia was so shocked at your decision. But it sounds like you made the right decision for your family.

      Good luck going forward and keep me posted on how your son is doing!

      Thank you again for your comment.

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